Feeling the weight of diagnosis.

I’m beginning to feel the seriousness of my diagnosis, Granulomatosis with Polyangiitis (GPA). In the last few days, I was unsure of how I was feeling and was trying to process everything. But the weight of it all felt like it might crush me…

I have the urge to run, burn some energy, just to stop my racing mind, and have a moment of quiet. Preferably in Hawaii, or somewhere, anywhere but here. Unfortunately, I am not able to breathe very well right now, so running is not really the best option. With necessary upcoming medical appointments leaving isn’t really an option right now either.

It’s hard to find out that you have a chronic/rare disease. Especially when it is a disease that is dangerous and without treatment/management, life-threatening. No matter what stage or symptoms, it is always life-altering. People can’t see your illness, many times we look fine on the outside. Most of us can power through and hide our pain. Many hear that it isn’t “cancer,” so they don’t understand and don’t take it seriously. They are unsure of what to say, and for many, it is hard to believe. Others see only what you are losing out on and still fail to realize the seriousness and consequences of such a disease.

Diagnosis can be, in a way, almost vindicating.

I didn’t ask for this diagnosis, nor did I want it. I’ve been ill for some time now, and it was never an excuse, or an act to seek attention. The constant fatigue, random and unexplainable pains, hot flashes, and a general feeling of malaise. To finally know that it’s not all in my head… is, well, vindicating.

It’s not that I want anyone’s sympathy, but for people to believe me when I say, “don’t feel well,” and that it isn’t just a “common cold.” What I really want is to have someone there for you who can listen and truly understand what I am going through, what I am feeling. Not just emotionally, but physically, and mentally.

Two of my aunts do have auto-immune diseases, so when I see them, they are great to talk to. They understand what it is like to have an auto-immune (AI) disease, but I don’t get to see or speak to them as often as I would like.

Luckily, I have a co-worker who is also a friend that I knew I could turn to. I knew she was someone who would understand what I am going through since she also suffers from AI and chronic illness. But I also decided to search out others who have been diagnosed with GPA specifically, and I am so glad that I did because I connected with Cay. We had a great conversation. I am so grateful that we connected.

Cay is a doctor, so she has a unique advantage in some ways, but what I am really thankful for is that she has decided to blog (Cay’s Anatomy) about her experience for others like me who are going through this tricky and challenging diagnosis. For those of you with GPA, or for anyone who wants to know more about Granulomatosis with Polyangiitis, I highly recommend her post: C-ANCA Associated vascul-WHAT?!?! This was the best description I have read… well, anywhere. Plus, it is written by someone with GPA, so it is from a perspective that I very much appreciate.

At this point in my journey, I still have more questions then I have answers. So much was and still is, at this point, unexplainable, even to most of my previous doctors. Even now, there is a specific incident we are trying to figure out how it is related and or how it will affect/alter my treatments.

In 2010 I had an incident that was never “officially” diagnosed. I was driving into work one morning when I experienced what can be described as a stroke. The whole left side of my body went numb, I couldn’t operate the car, and I don’t know how I managed to pull over, but I did. Eventually, I was able to drive the rest of the way into work. When I arrived, my speech was still slurred, and my co-worker called my husband and off to the ER I went. I was given an EKG and an MRI, nothing looked to off to the Internal Medicine doctor who attended me. Not being able to make sense of anything, she claimed I had a migraine with aura, gave me some low dose blood-pressure medication, and sent me on my way.

Still not feeling right I continued to contact her asking questions, she finally referred me to a Neurologist who 100% disagreed with her diagnosis. He believed that I had possibly had a small stroke, likely from a blood clot, and he requested a bubble test, otherwise known as a Transcranial Doppler (TCD). TCD is an ultrasound that finds bubbles (that they insert into your veins) that end up passing through your heart and into the arteries that supply blood to the brain.

My Internal Medicine doc didn’t believe that they would find anything, she was wrong. They found a hole in my heart. There wasn’t much follow up from her, she decided to keep me on the BP medication and started me on an aspirin regimen. By the time I had a prescription refill, she had left town… I didn’t want to go through the testing again at the time or the explanation of what happened, so I blew it off…

I have a few more incidents after, some that were witnessed by my husband that included slurred speech, facial numbness, and more… I also experienced quite a few absence seizures.

Now we are in the process of getting all of those records from 2012-2016. They may be related to my GPA, they may be something else entirely. We won’t know until my doctors go over all of those records, and possibly more testing 😖.

At my doctor’s recommendation, I’ve made the decision to keep a symptom journal and write down every question that comes to mind. I have to be my own advocate for my health. I know what I am feeling, even if others don’t. It’s hard to explain and remember everything when there are so many different symptoms, and for me, they come and go.

Honestly, I’m kind of a wreck. Trying my hardest to get up every morning, keep up with my workload. Power through the pain, fatigue, lack of energy, and breath… not to mention the small lapses in my concentration, memory, and my general bouts of anxiety.

At least now, I don’t feel so alone. I’ve I’ve always had Justin, who is so supportive (I’m I’m lucky to have him), but to now also have others with GPA or similar AI diseases that I can talk to is comforting.

It is why I’ve decided that I will continue to share my story. I hope I can offer comfort to others going through similar experiences.

For those of us suffering from AI diseases, remember we are not alone. There are those out there who understand what we are going through, each other. 😉.

2 Responses to Feeling the weight of diagnosis.

  1. Louise

    Thank you so much for courageously sharing your experience, Candace!! Wow, I’m so sorry you’re going through all this. This is a lot. 😞 I feel the same way about finally getting a diagnosis….on the one hand it is, to a degree, a relief/vindicating, on the other it’s the beginning of a new, painful journey. It does seem like anything that helps us understand where our symptoms are coming from (and can maybe help others understand as well) must be a step in the right direction. But that step can really feel like stepping off a cliff… 😬

    So many people will simply never “get it.” They’ll never empathize. Sometimes they can’t, sometimes they don’t even try to. Even people we thought we were close to… But those who DO try, who see us break and hug the pieces as they fall, even though they might get some cuts in the process…well. They’re keepers. ❤️

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